8cm Complex Ovarian Cyst with CA125 of 51 - Absolutely terrified!!

I posted on here a few days ago after I found out unexpectedly that I had a large complex ovarian cyst. The consultant thinks it could a dermoid cyst but can't determine this for sure and is sending me for an MRI scan. In the meantime, my CA125 has come back raised at 51!!! I'm postmenopausal which just adds even more risk into the mix and I just feel like the odds are stacking up against me. I've had no symptoms and only got checked out because of a tiny amount of postmenopausal bleeding. I'm all over the place.

Parents
  • Hello jembers, I wrote on your first post as I also have an incidental mass very similar. 
    when I had my CA125 test I was told it is very likely for a raised amount even if only a cyst as it can signal other things like pelvic inflammatory. The levels can be in their hundreds just on a period so actually the fact that you went to the docs with some post menopause bleeding might actual explain the higher level.

    when is your MRI? I am also awaiting mine, I had to have further bloods taken on wed and awaiting my MRI now. 2-4 weeks. 
    more waiting…..

    keeping everything crossed for us! 

  • Hi cloudy1986, thanks so much for checking in with me, it means a lot. I've been given an appointment for 23rd December (Merry Christmas!!) I'm clearly on an urgent 2 week wait due to the nature of my cyst, my age and my blood test results. It's very hard not to fear the worst. I'm trying to remind myself that my situation could be completely benign, but due to my terrible habit of googling, I've convinced myself that it's something terrible! I am genuinely sending as many positive thoughts to both of us as I possibly can. X

  • Who ever thought Steve would be the saviour in this. So glad to read it’s stage 1 and hopefully contained and maybe even already over and done with now. Or will they do chemo for belt and braces? Sending love, even catching it so early, that’s hard to hear. I’m just so glad you are getting great care and hoping for a quick referral for you so you can have a plan in place. 
    wonderful news your sister is home too, that really is great after 11 long weeks. 
    how are you in your recovery? Managing to get about now? Sending lots of get well wishes your way x 

  • Ha I know! Yes maybe they don’t do anything but consultant thought I should take what they offer just in case anything microscopic had escaped! Recovery has been ok so far… can’t drive so that’s a pain but hubby has been fantastic… even on the pink jobs !  Have a fab weekend xx

  • Aww, I'm so glad you have had good support. I would nuke it if it were me, just in case. You're post menopause, yeah? So it's not like it's going to take your cycle from you. But I guess HRT is out of the picture for you and yours as ovarian cancer is so prominent.

  • Yes that’s what the consultant said tbh… if they offer anything take it! Yes I am post menopause but having dreadful night sweats, which I never had before… anyone else had similar issues after hysterectomy? Have a fab bank holiday Monday x

  • I had night sweats for a few weeks after my hysterectomy in 2013. I kept my ovaries but it still sent my body into a spiral hormonally as I was only 30. They did settle down though. Hope yours do too!x

  • Thanks hun, I am taking supplements that may help but so weird as wasn’t expecting it!  

    I am sadly a little older than that…

  • I've been post menopausal for 3 years now, and my hot flushes and night sweats had already started to settle down. As well as the dermoid cyst, I chose to have my ovaries and fallopian tubes removed, and wondered if my symptoms would reappear. I actually think they're even less noticeable than before, so I'm quite relieved about that. On the other hand, every time I forget something or look in the mirror and see more crows feet around my eyes, I automatically blame it on having no ovaries anymore! My husband finds it most amusing and keeps saying "is that because you've had your ovaries removed?"

  • I didn’t really suffer at all when I went thru the menopause but since Steve was removed it’s something else! The heat is awful not helped by the warm nights! I will see what I can find naturally on dr Google and that! My hubby wants me to get a noob job now as I have list 16kg since this started … mostly boobs… men eh!!

  • An update on my not so little friend had my consultant appt was referred to the MDT who have decided I need a CT scan with contrast no explanation why just got a call to book an urgent one whilst I away which I can’t do. The poor girl booking me in couldn’t answer my questions. The consultant I saw made it sound so simple but now I am wondering what the experts have seen on my ultrasound and mma is  more oF a concern than they are letting on. My CA125 is 42. Either way Gemma at nearly 9cM has to be removed surgically they can’t leave it in. I am freaking out on holiday now why a CT not MRI CT sounds so much more serious. God why is this happening to me I have my sons wedding in 9 months

Reply
  • An update on my not so little friend had my consultant appt was referred to the MDT who have decided I need a CT scan with contrast no explanation why just got a call to book an urgent one whilst I away which I can’t do. The poor girl booking me in couldn’t answer my questions. The consultant I saw made it sound so simple but now I am wondering what the experts have seen on my ultrasound and mma is  more oF a concern than they are letting on. My CA125 is 42. Either way Gemma at nearly 9cM has to be removed surgically they can’t leave it in. I am freaking out on holiday now why a CT not MRI CT sounds so much more serious. God why is this happening to me I have my sons wedding in 9 months

Children
  • It's reasonable to be upset. Mine was over 10 cm with similar ca125 but it wasn't cancer. They treated me to both MRI with contrast and CT with contrast. I think they can see different things clearer on each type. It wasn't cancer for me and I hope it won't be for you. Deep breaths, you've got this x

  • I think you're still more or less following the same path that I was on, and you'll continue to be treated as urgent until they've had a good look at everything. I don't think you should read too much into the decision to do a CT scan rather than an MRI. Either method will give them the same information, but what I do know is that a CT scan costs less than an MRI scan, so maybe that's the reason. X

  • Going on my experience… it really is better to be safe, I was fast tracked and had CT with contrast and it showed a pretty large cyst, I have now had the op and recovering at home..,had it been delayed it could have been a lot worse hun x

  • Bless you, try not to panic away your holiday. I echo what others have said - a CT scan is faster and a lot cheaper for the nhs than an mri.  A nurse friend of mine told me that a Ct scan shows the edges of things and an mri shows the inside of things, so if someone is trying to determine what a tumour is - it’s more likely to be an mri, and if someone is trying to determine size, location it would be a CT. 
    my dermot was almost 9cm and out he came no problem. 7 weeks post op now, still no histology but hoping the delay is a good thing. The fear while he was inside didn’t really fade so I know how you feel, it’s ok to be stressed and anxious. You’ve got this. Step by step x 

  • Thanks every one for the reassurance scan day today back after a lovely holiday. You are all so amazing reading your journeys so far I just want this to be over it’ the waiting and not hearing that’s the worst but knowing this platform is here is comforting. Hope you are all healing well. 

  • hope you coped well with the scan and that the results will be reassuring xx

  • Have you had any word from scans etc yet?x

  • Any word on your histology yet? That’s me 9 weeks since surgery and not a thing. I tried to chase after week 6 and my gynaecologist was off on bereavement leave. I’m hoping I won’t be waiting much longer. Just want to not think of this anymore! 
    how’s your recovery? I’ve been pretty much fine for weeks, occasionally if kneeling or bending in half I’ll get a wee sharp pain, I forget that I could still have internal healing going on! X 

  • Hey, lovely to hear from you. I'm the same. 9 weeks tomorrow and not a thing! I'd like to think that if they were concerned about anything, I would have heard from them by now. My recovery has been good. The only thing I have occasionally is a little tenderness in my belly button area. I agree that having the whole thing finally crossed off and finished with will be a big relief. Why does the hospital always say 2 weeks when you ask them about results? It's clearly a load of rubbish! X

  • Oh well at least we are in the same boat. I hope that no news is good news too. I think my pain is from the ovary reconstruction, I hope so anyway. It certainly feels exactly where I imagine my ovaries are now they are not welded to my other organs. Haha. 
    how is the lump area you had on your belly area after surgery? Has that gone away?x